Psychosocial and medical determinants of long-term patient outcomes A specific focus on patients after kidney transplantation and with haemophilia L u c i a P r i h o d ova Copyright © 2014 Lucia Prihodova Copyright © 2010 John Wiley & Sons, Inc. (Chapter 3) Copyright © 2011 John Wiley & Sons, Inc. (Chapter 7) Copyright © 2011 John Wiley & Sons, Inc. (Chapter 10) Copyright © 2013 John Wiley & Sons, Inc. (Chapter 8) Copyright © 2013 John Wiley & Sons, Inc. (Chapter 9) Copyright © 2014 Lippincott Williams & Wilkins (Chapter 4) Copyright © 2014 John Wiley & Sons, Inc. (Chapter 5) Copyright © 2014 Lippincott Williams & Wilkins (Chapter 6) Thesis for the University of Groningen, the Netherlands – with a summary in Slovak and Dutch. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means electronic, mechanical, photocopying, recording or otherwise, without prior written permission of the author. Correspondence: luciaprihodova@gmail.com This work was supported by the Science and Technology Assistance Agency under contract APVV-0220-10 (80%). Furthermore, this work was partially supported by the Agency of the Slovak Ministry of Education for the Structural Funds of the EU, under project number ITMS:26220120058 (20%). The printing of this thesis was supported by the Graduate School for Health Research (SHARE), the Graduate School Kosice Institute for Society and Health (KISH), University Medical Center Groningen (UMCG) and the University of Groningen (RUG). Design and layout: Lucia Prihodova, Dasa Kosztankova (Dupla) Book cover: Dasa Kosztankova (Dupla), www.duplacreative.com Language proof: David L McLean Press: Garamont Nitra Printed in the Slovak Republic ISBN: 978-90-367-7142-9 ISBN: 978-90-367-7141-2 (electronic version) Psychosocial and medical determinants of long-term patient outcomes A specific focus on patients after kidney transplantation and with haemophilia Proefschrift ter verkrijging van het doctoraat aan de Rijksuniversiteit Groningen op gezag van de Rector Magnificus prof. dr. E. Sterken en volgens besluit van het College voor Promoties. De openbare verdediging zal plaatsvinden op Maandag 29 september 2014 om 16.15 uur door Lucia Prihodova geboren op 23 april 1983 te Sala, Slowakije Promotor Prof. Dr. J.W. Groothoff Copromotores Dr. J.P. van Dijk Dr. I. Rajnicova-Nagyova Safarik University Kosice, Slovak Republic Dr. J. Rosenberger Safarik University Kosice, Slovak Republic Beoordelingscommissie Prof. Dr. R.T. Krediet Prof. Dr. R. Sanderman Prof. Dr. W.J. van Son Ps ych o s o ci a l a nd med ic a l d etermina nt s of long - term p atient outcomes C o n te n ts Chapter 1. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 Introduction Chapter 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25 Data sources PART I Quality of life and patient outcomes in kidney transplant recipients . . . . . . . . . . . . . . . 37 Chapter 3 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39 Impact of personality and psychological distress on health-related quality of life in kidney transplant recipients Chapter 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57 Health-related quality of life 3 months after kidney transplantation as a predictor of survival over 10 years: a longitudinal study Chapter 5 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73 Adherence in patients in the first year after kidney transplantation and its impact on graft loss and mortality: a cross-sectional and prospective study Chapter 6. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 93 Social participation after kidney transplantation as a predictor of graft loss and mortality over 10 years: a longitudinal study Part II Quality of life and access to treatment in patients with haemophilia . . . . . . . . . . . . 111 Chapter 7 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 113 Haemophilia care in Europe: a survey of 19 countries Chapter 8 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 127 Haemophilia care in Europe: a survey of 35 countries Chapter 9 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 147 A survey of the outcome of prophylaxis, on-demand treatment or combined treatment in 18–35 year old men with severe haemophilia in six countries Chapter 10 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 161 A survey of the outcome of prophylaxis, on-demand or combined treatment in 20–35 year old men with severe haemophilia in four European countries Chapter 11 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 167 General discussion, implications and conclusions Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 187 Samenvatting. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 193 Zhrnutie . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 197 Acknowledgements. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 203 About the author. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 207 Graduate School Kosice Institute for Society and Health (KISH) and previous dissertations. . 211 Groningen Graduate School of Medical Sciences – Research Institute SHARE and previous dissertations. . . . . . . . . . . . . . . . . . . . . . . . . . . . 217 Abbrev ia tions ANOVA Analysis of covariance BP Bodily Pain CCC Comprehensive care centre CCI Charlson Comorbidity Index CI Confidence interval CKD-EPIEstimated glomerular filtration rate assessed by Chronic Kidney Disease Epidemiology Collaboration Equation CSE The Coping Self-Efficacy Scale DDAVP Desmopressin acetate eGFR Estimated glomerular function EHC The European Haemophilia Consortium EPQR-A The Eysenck Personality Questionnaire Revised – Abbreviated EQ-5D The EuroQOL five dimensions questionnaire ESRD-SCL-TM The End-Stage Renal Disease Symptom Checklist – Transplantation Module EU The European Union FVIII/ FXI Coagulation factor VIII/ XI GH Perception of general health GHQ-12 The General Health Questionnaire-12 GLM General linear model HR Hazard ratio HRQoL Health-related quality of life HTC Haemophilia treatment centre ITI Immune tolerance induction IU International units KT Kidney transplantation MCS Mental Component Summary MH Mental Health MSPSS The Multidimensional Scale Of Perceived Social Support NHC National Haemophilia Council NMO National member organisation PCS Physical component summary PF Physical Functioning RE Role Limitation Attributable To Emotional Problems P s ych o s o ci a l a nd med ic a l d etermina nt s of long - term p atient outcomes RP Role Limitation Attributable To Physical Problems RRT Renal replacement therapy SF Social Functioning SF-36 The Short Form Health Survey Questionnaire SP Social Participation VIF Variance inflation factor for Multicollinearity VIT Vitality WFH The World Federation of Haemophilia